LIFE IS A SPECTRUM

debbydowner

Pass the cookies. I need to hate some more.

I'm fighting a familiar super-villain this week: Hate. And his sidekick: Blinding Rage.

Hate kinda left me alone before I had kids. I disliked or was irritated by certain people – or more specifically, the things certain people said and did and the way those-who-will-remain-nameless block the whole aisle at the grocery store AS THOUGH NO ONE ELSE HAS TO BUY CEREAL!! (deep breath)

I guess I came pretty close after 9/11. Strangers are easier to hate, especially homicidal maniacs who murder thousands of people. But I was too consumed by deep sorrow and fear and confusion to be able to muster up the energy for a whole lot of hating at the time.

Because hating takes a lot of energy. When I really get down to the business of hating, I don't have the energy for anything else. I pretty much have to lie down and just hate full-time. And eat. I can hate and eat at the same time.

“Your policy has no autism benefits.”

This news totally flattened me. I am not someone who is good in a crisis; I get hysterical and completely fall to pieces and Dave is left with the job of putting the pieces back to together AND dealing with the crisis. Only there aren't clear-cut pieces like in a puzzle; supporting me in crisis is more like trying to scoop up a mud puddle with your bare hands. If the mud puddle can yell at you.

As I shared earlier this week, we're trying to get ABA therapy for Billy. While we can get speech and occupational therapy – because those therapists can use a medical code for filing – we are not entitled to behavior therapy, because that's not, they tell us, medical – at least not for members of groups with less than 50 members. If you're a member of a group with 50 or more people, the rules change.

Meanwhile, Billy has lately been showing a high level of anxiety and some aggression at times, which is affecting his ability to eat and sleep and function at school. More speech therapy is not going to help that.

Every medical expert we've seen has agreed that what Billy needs right now, what has the greatest chance of success, is an ABA intervention. And the earlier he gets that therapy, the better he's going to be at handling the inevitable crises and changes that come up in life. Essentially, the more therapy he gets now, the less he'll probably need in the long run.

I'm sorry. I don't feel very funny today. I feel guilty that I didn't somehow plan for this better. I don't know what we could have done, but I guess we should have sat down, before having a child, and gone over every possible outcome: “And if he has a genetic abnormality? Is that covered? What about TB? MS? Parkinson's? Ebola?” And then buy supplemental insurance for every gap in coverage we find.

There is a light at the end of the tunnel: My mom – who, by the way, is awesome in times of crisis, and it's probably her fault that I'm so useless because I'm so used to being so expertly cared for – got on the phone to Florida KidCare. That's the insurance that's available to all kids in Florida, regardless of their families' ability to pay.

They told her that, while we'd have to pay the full premium amount (about $120/month), autism is fully covered: ABA, speech, OT, you name it.

Now my question: Anyone out there have experience with KidCare? Is it difficult to find a provider? Any input would be greatly appreciated before we make a decision about moving Billy's coverage. If this works out, I will be the biggest proponent and advocate for KidCare in the Sunshine State.

Please stop back by tomorrow when I promise I will rise from the couch, dust off the crumbs and try to crawl out of my hate hole.

Reader Comments

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We are currently in limbo with any kind of therapy for my son.
Our personal insurance doesn't cover it.
The state insurance has deemed that he is not bad enough.
So we are just waiting.
Waiting for him to get a whole lot worse. I do not know if we can handle much more worse as a family.
I do not understand why they do not want to do more preventive so that the child does not get worse.
So frustrating.

Stopping by from SITS.

Medicaid Home-Based Waiver

Do you guys have the Medicaid Waiver in FLA? I thought that every state had a form of it. Basically they waive the income requirements and your kid is on Medicaid...but there's no premium that you have to pay and you get $ that can be put towards ABA. That is how we pay for our program. We get about $15K/year. Some states are as high as $36K/year. I tried to do a Google search but couldn't find info for FLA.

Clarification

Sorry if I sounded like I thought all ABA programs were too limiting. I only looked at one program on one day. Although the Kennedy Krieger Achievements program is well known I'm sure there are many very different programs plus things have probably changed a lot since my son was pre-school age (he's in 6th grade this year). On that day I wasn’t overly impressed, but it also was tinged with sour grapes since there was no way my son was going to be able to get into the program. Also, my son's needs are not the same as other autistic kids. In the same way that I'd like people to not think they understand my kid because they know one example of a person with autism (usually Dustin Hoffman in Rainman), I don't want to say I know everything about ABA from a 2 hour visit 7 years ago.

Thank you all so much

Well, I'm out of my hate-hole, thankfully :-) And I wanted to say thank-you to all of you who do, indeed, know what it feels like to have your child denied insurance benefits. Whether it's for autism -- or something else unexpected -- it's scary and frustrating.

@aparent: Thank you for sharing your link. While I don't agree completely with your assessment of ABA, your articulate post reminded me that I *am* a firm believer that the best "therapy" in the world is what we, as parents, do all day every day: we love them, we support them, we work with them to the best of our ability. I am a firm believer, too, that relationship-based therapy is the most effective.

I used to think, like you, that all ABA was essentially "dog-training." Then I observed the work that an ABA therapist did with my son at school and realized that these therapists, like all of them, vary greatly from one to the next. Most ABA therapists that I've observed take a very relationship-based approach, realizing that any therapy not firmly grounded in the joy of the child is doomed to failure -- whether that failure is in its performance results or the child's sense of self-worth. I have NO time for anyone trying to break my unique child's spirit in the name of therapy.

We're exploring options and meanwhile, we're still doing what we're doing. I have been too focused on the problems Billy has had lately, forgetting to celebrate new achievements: he's been trying new foods at school, he's made a new "reading buddy" friend from the 4th grade, and he has been working very productively in all his speech therapy sessions with a new therapist. He's even slept through the night for the last four nights!! OK, so he pulled the fire alarm at school yesterday (yipes); some of that is just 4-year-old boy.

Instead of celebrating these achievements, I fell into the trap of mourning all over again. That mourning blindsides me sometimes. I see a neurotypical child do something that Billy "should" be able to do and I cry for a week. Some stimming behavior reasserts itself and I go back down the rabbit hole for a while, convinced that I'm completely ill-equipped to help him, that there has to be some magic bullet out there, that I'm doing everything wrong.

Eventually, I snap out of it. And usually, he's the one that snaps me out of it. It can be as simple as running to me with open arms and a big smile at school pickup (something else new that started this week). Or cuddling up with Willow on the couch and holding her hand. But thank you all for helping see me through this bout of self-indulgent wallowing. I'm back :-)

Hello, if your still seeking information regarding Florida KidCare please give me a call 1-888-352-5437x0 ask for Consina.

Thanks

Moms are Great...

I hope the KidCare thing works out...glad your mom found them!

Wendy

Hang in There

I live in Florida but know nothing about KidCare. The whole insurance thing is horrible. I've almost given up on them convering anything autism related. I wish I had some great advice for you - but I don't. If misery loves company, then I guess I'm keeping you company on this one. Hang in there.

Sorry You're Going Through This!

I hope the KidCare works out for you! Good luck!

Total 9 comments

INT. HOME OFFICE - DAY

bandit

Hi, I'm Bandit. Press 1 to automatically deny your own claim. Press 2 if you'd like me to do it for you.

MONTAGE: Dave is on the phone, on hold, for what seems like hours. We can hear the hold music playing on the speaker phone in the background. He leans back in his chair, drums a pen on his desk, eats chips, reads football news online, creates a chain of paperclips, etc.

SPEAKER PHONE: Major Health Insurance Company. How may I help you?

Slams his chair down and picks up the phone.

DAVE: Yes! Finally! I'm calling because we were told that you're denying coverage of our son's ABA therapy.

MAJOR HEALTH INSURANCE COMPANY: Policy number please.

Dave gives her the policy number, the group number, the social security numbers of various members of our family

(Looooooooong pause...)

MHIC: I'm afraid yours is a small group policy, and therefore, you have no coverage for autism therapy.

(Another long pause.)

DAVE: That doesn't make any sense. We pay higher premiums and have a much higher deductible than large groups.

MHIC: Your policy does not include any autism benefits.

DAVE: Ok, Ok. But he's been getting therapy for the past year and Major Health Insurance Company has been covering it.

MHIC: Not for autism.

(Another long pause.)

DAVE: But can you see that our son has been getting speech and occupational therapy?

MHIC: Yes, I see that.

DAVE: And you've been covering it?

MHIC: Yes, we have covered that therapy.

DAVE: Well, he's autistic. That's why he gets the therapy. Why can't he get the ABA therapy his doctor recommends?

(Another long pause.)

MHIC: The code under which speech and occupational services were filed was not autism.

DAVE: It wasn't? Well, what was it? The code?

MHIC: I'm sorry, sir, but I'm not at liberty to disclose that information.

(Long long long pause. We think we can hear the sound of a man putting his head through a wall in the background.)

DAVE: Let me get this straight. Billy can't receive therapy for autism. He can receive – and has received -- therapy if we call it something different which has a different code. But you can't tell us what that code is.

MHIC: I cannot disclose the codes for which services have been filed in the past.

DAVE: Can I guess?

(Semi-long pause.)

MHIC: Sir?

DAVE: Is the code ABC123?

MHIC: No, sir --

DAVE: DEFEXYZ?

MHIC: Sir--

DAVE: That's not it? Am I getting warmer? Is it the number 42? Is it my phone number? Is it the Da Vinci Code?

MHIC: Sir, I'm afraid --

DAVE: WHAT. IS. THE. CODE????

And that's when the hold music starts again ...

My fellow autism mom, Lynn over at AutismArmyMom, wrote a hilarious and excellent post about the recent experiments in using a Robot named Bandit to teach autistic children. I don't even have to make fun of the concept of robot autism therapists, because Lynn has already done it so well and said everything that needs to be said on this subject.

But as I said to her, rather than use robots for autism, maybe they could hire them to answer the phone at Major Health Insurance Company. I could send Bandit off to work each day. In fact, if my robot was earning a paycheck as a customer service representative, maybe I could afford ABA therapy for my son.

A bit of serious advice to anyone dealing with Major Health Insurance Company: Whatever happens, don't let them drive you crazy. Their mental health benefits are terrible.

Reader Comments

AGHHHHHHH!

I hate health insurance companies! Get this...our health insurance company does cover speech for autism. It says so clearly in their brochure of services. But they were refusing our claims because our daughter was getting her speech services in a group setting. Her issues are pragmatic--conversational skills. She doesn't benefit from one-on-one with a therapist. She needs to converse with peers. The brochure said NOTHING about group settings NOT being covered. In fact, it's MUCH cheaper, so they should have been thrilled. We had to fight this for a year. My husband had to have both the speech therapist and Lynn Koegel (a nationally known autism expert who heads up the autism center at U.C. Santa Barbara and has written several books on autism) write letters and the efficacy of small group sessions. They STILL refused because their "expert" said there as no proven research in this area. So, we had to appeal, and resubmit our experts' claims. We FINALLY received our $800 reimbursement last week. My husband looked at it and said that it SO wasn't worth the time and effort everyone put in to get the check. It's crazy! The health insurance companies just hope to wear you down. And this is for a service that was COVERED per their literature.

We have to battle everything every step of the way. I was worried when I read your post that they would stop covering your speech and OT since they don't cover autism. You have to tread very carefully! You don't want them to change the code to autism and stop covering it.

Insurance companies

You hit the nail on the head: They want to wear you down. They can afford to wear you down. It costs them nothing. I'm glad to hear you finally got your reimbursement but it is CRAZY and ILLOGICAL that you have to fight so hard to get it. Particularly, as you point out, it was actually cheaper for them to pay for the group communication therapy. (BTW, Billy's in Group as well, and our insurance doesn't cover it either. Grr.)

We *did* receive a different code/diagnostic label from our neurologist that we gave to our ABA therapy group on Friday. Stay tuned to see if that helped or not. But like you said, I'm terrified that the upshot of all this is going to be that they don't cover anything.

Health Insurance can SUCKIT!

I cannot begin to explain how much I hate health insurance.
For YEARS geneticists have wanted to test my 2 boys for various genetic disorders they believe may have played a role in their diagnoses of autism. Fragile X, to name 1. That little test costs $1200! However, our health insurance refuses to pay for it because they say the test itself is only good for information and cannot actually change anything or provide any benefit to the boys health.

I believe I may have reached through the phone and throttled that customer service rep. that day.

Ugh

Had the same exact problem years ago. I think I reacted almost the same way your husband did. I was able to figure out the "right" diagnostic code by asking the therapist who had previously been successful in getting our claims paid. It is worse than an episode of the Twilight Zone dealing with these institutions.

I *am* the Bandit!

Thank you, citymouse, for the heads up on the law! That is very good to know if our magic code doesn't work tomorrow. And I'm so glad you found me through SITS! I made so many great contacts this past week; now I'll NEVER get anything done, because I have so many great blogs to read :-)

Lynn: I'm going to tread lightly here, because I know you're right -- we could end up with the big fat Zippo. Dave and I both have a terrible inability to keep our mouths shut when faced with illogic. And the whole short-term/long-term condition weirdness is as stupid as the logic behind giving less coverage to those of us paying more or not giving us a code that our therapist gave them to get them to cover ... ARGHHGHGH!!! (BANDIT MAD!!!)

I just wish this country could pull its collective head out and decide that children and old people should get anything they need to get better. That's about as political as I get, but I'm pretty adamant about it. There shouldn't be any kids with autism unable to get therapy, and there shouldn't be any old people watering down their milk so that they can buy prescriptions. Dear lord, how did I make a detour on to this rant? I'll meet you in the bell tower.

Insurance companies

Bandit must not be used for evil purposes...Bandit will rise up and revolt! I was going to say what Cheryl said...you have to be careful not to draw attention to the coverage that you ARE getting because you are getting it most likely under an apraxia or global delay diagnosis code. If they smell the old 299.0 you might not get anything. Luckily, the mental health and medical sides of these MHIC's don't usually talk to each other. Here's the ultimate irony: you are only supposed to get speech and OT covered if the condition is rehabilitatable (totally not a word) and not if it's chronic like autism. That's right: Short-term condition = all the coverage you want, long-term condition = goose egg. Makes sense, right? I need to fetch my sniper rifle again...

Really???

Stopping by from SITS and I love your blog.

In a former life I handled insurance billing. Your insurance company cannot refuse to tell you that information or even supply you with a copy of the claim if you request it. Next time that happens, tell them it is a federal offense to withhold your PHI (personal health information). The Office for Civil Rights is responsible for HIPAA and this falls under it.

MHIC

Thanks very much for the suggestion, Mary! You are absolutely right; the people who know us and our son are MUCH more likely to want to help, and actually, the new ABA therapists have been bending over backwards trying to help us.

We tried actually going to his old speech and occupational therapy clinic -- we've recently changed locations. But we got put on hold/transferred so many times, that we went to the neurologist and bingo! We got the code. Or a code. We'll see if it's the magic Da Vinci code on Monday. If not, we're gonna go back to the speech/OT clinic.

The fight rages on ...

Bandit is already there.

The part Mandy didn't mention is the wildly frustrating 20 minutes I spent speaking to Bandit BEFORE I actually got through to a real live person. Bandit wants to know my address, social, policy number, etc etc. Bandit does not understand a British accent, so I have to repeat everything again and again, before eventually resorting to my best Redneck impersonation, which of course works immediately. I am calling from work. All my co-workers now think I'm insane. And when I do finally get handed off to Bandit's living side-kick, I am asked all the same questions again. Unbelievable....

Correct me if I'm wrong...

...but I think the therapist provides the code in order to charge the insurance company. And I'll bet you if you talked to your therapists, they may not have used the autism-specific codes BECAUSE they knew / found out that MHIC wouldn't cover it, so they used something similar and not autism-related. AND, I bet if you talked to them - they'd give you the code, for future reference and use.
I find that the people directly serving me, working with me, and having a hands-on role in my life are MUCH more receptive and helpful than the anonybots with headphones on the other end of the hold music.

*EDIT* Just looked at other comments, and saw you've already gone this route - good luck!!

Total 10 comments

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